Jensen James was born at 34 weeks and 5 days on Friday, August 5, 2016 at the University of Michigan Von Voigtlander Women’s Hospital/C. S. Mott Children’s Hospital. When he arrived, he weighed 5 lbs. 12 oz and was 18.31 inches long. He had blonde hair, blue eyes and the cutest little face. He had a little button nose, full cheeks and lips. And a sweet little tongue that stuck out of his mouth. We lovingly called him “JJ.” Unfortunately, Jensen had been fighting a battle to live long before he was even born. After he was born, he continued to fight that battle and was able to live for 43 glorious hours. The challenges he faced were too hard to overcome and he died surrounded by family and in the loving arms of his mother and father on Saturday, August 6, 2016.
You are probably wondering why Jensen died. We wonder that too. But, medically, there are answers. The story starts when Jensen was diagnosed with Down syndrome (Ds) via prenatal testing at 20 weeks. Down syndrome is a genetic disorder caused when abnormal cell division results in extra genetic material from chromosome 21. There are three forms of Ds, and Jensen had the most common type that accounts for 95% of cases; Trisomy 21. Trisomy 21 is essentially three copies of the 21st chromosome. If you are familiar with genetics, there are only supposed to be two copies. The additional genetic material alters the course of a baby’s development and causes the characteristics associated with Ds.
With Ds comes an increased risk of certain health issues due to the extra genetic material. Many of these medical conditions can be treated, and many people with Ds will not have these medical conditions. Unfortunately, Jensen had several health issues that he faced. Among the issues were congenital heart disease (i.e., severe ventricular septal defect, severe coarctation of the aorta, aortic stenosis and atrial septal defect), hydrops fetalis and congenital chylothorax.
It was around 33 weeks that Jensen was diagnosed with hydrops fetalis, meaning he had fluid accumulated around his lungs and around his stomach. He underwent several in utero procedures leading up to his birth. These included three separate procedures to drain the fluid and the placement of a shunt in his pleural cavity to continuously drain the fluid out and away from his lungs. The shunt procedure proved to be unsuccessful, and after careful deliberation by his doctors, he was born via emergency c section. After he was born, the doctors and Jensen continued to fight together for his life. But, the odds were stacked enormously against him and the health challenges he faced were too big for this world.
Jensen is a grandchild, a great-grandchild, a son, a cousin and a nephew. He was and is greatly loved by family and friends. He touched so many lives while he was here and continues to impact our lives every day. He brought us joy, love and happiness even before he was born. He taught us so much about life and love. He taught us more about life than we could have ever taught him. Our hope is that his life is remembered as a message to all of us to be compassionate and kind to others. He was an absolute gift.